Thursday, December 10, 2009
Worker bees have six weeks...
Watching a doco recently on the two survivors from the Excalibur yachting tragedy: there's this syndrome they talked about, having survived the sea, their next couple of years was all about doing everything NOW.
I guess I'm feeling a bit of that six months down the track - do it NOW ... no NOW!!!!
... because we don't know how long we've got. Be it Pacific Ocean storm, a gob in the head, truck on a bend ... gone.
So, anyway, I'm a beekeeper now. I've talked about it for a couple of years, coming out of brain surgery with the NOW!! syndrome has made it a reality.
Jason's son Finn took some pics from a safe distance while we stirred up our 40,000 ladies the other day - if the Homer Simpson at his nuclear power station cartoon imagery isn't funny enough, two blokes in those suits trying to get under highly tensioned fence wire is even better.
EEG results abnormal as Neurologist suspected: he's now drawn a direct line between this thing in my scone and 19 years of Temporal Lobe Epilepsy. That's good - perhaps - in that it maybe means it took 19 years to be 20mm in size. Perhaps. Maybe.
His POSSIBLE diagnosis is idiopathic hypertrophic pachymeningitis. Impressive sounding - feels like you're getting value for money when there's 15 syllables involved and a good measure of Latin.
I'm getting on with my beekeeping ... and the launch of my creative hub ... and managing my holiday house ... and bike riding ...swimming... planning lots and lots and lots of hiking... NOW!!!!!!
Tuesday, October 27, 2009
Recovery tunes
A spring in the step helped along by sunshine and tunes and orchid season.
A list of some stuff I've been listening to these past couple of months: You'll probably pick the 'recovery mode/getting stronger' thematics among some of the lyrics, and probably a hint of the coming to grips with mortality stuff ... I left out The Rocky Theme.
Astair Matt Costa
Red Sails Custom Kings
The Captain And The Hourglass Laura Marling
Rose Pickles Custom Kings
Middle of the Hill Josh Pyke
Spin My Thread Custom Kings
Forward Joe Neptune
Lullaby Jack Johnson
Behind The Moon Matt Costa
I Shall See My Love No More Joe Neptune
Wondering Where The Lions Are Donavon Frankenreiter
Forever Jesse Younan
Swimming in the Darkness Custom Kings
Yellow Taxi Matt Costa
Sew My Name Josh Pyke
Sweet Rose Matt Costa
You Don’t Scare Me Josh Pyke
Scattered Black And Whites Elbow
Light Inside Of You Andrew Kidman
Where Two Oceans Meet Josh Pyke
Johannah Mishka
Summer’s Not The Same Without You James Yorkston
It Isn’t Me Mat McHugh
Tap At My Window Laura Marling
Tortoise Regrets Hare James Yorkston
Beautiful Day Donavon Frankenreiter
Reasons Are All I Have Left Art Of Fighting
Don’t Think Twice, It’s Alright Donavon Frankenreiter
My Other Dream of You Joe Neptune
You’ll Change Machine Translations
Just Go Indigo Joe Neptune
Old Fashioned Morphine Jolie Holland
Wednesday, October 21, 2009
hunting spiders, donkeys and birds
Thanks to Gaye, Pat and Geraldine for letting me crash their orchid hunting party on Tuesday ... more wonder with Emma's camera in the small spaces.
Fire clearing and good spring rain at Wilsons Promontory have combined to bring the best show of native orchids in many years - millions of them. Tiny and stunning.
They were all there: spider orchids, donkey orchids, greenhoods, sun orchids, hyacinth orchids and red bird orchids. On top of this display - the xanthoreas were in flower after last year's fires - a close up on their constellation-like flower stems is here.
A glow comes from a couple of hours behind a lens in these places: they're the very images that you need to hold to staring at the roof of a high dependency unit - a million reasons to stick around that bit longer.
Monday, October 5, 2009
back on the roads
It's not trekking the Argentinian altiplano - yet - but a four day bike ride across central Victoria with a great bunch of crew helped very much to feed the feeling of getting stronger, and getting back on the roads.
Tour de Heartland was good fun, but meant a lot more in terms of signposting recovery (though Digger and I agreed we both like the word 'reinvention' rather than oft abused 'recovery' or 'comeback'): I gave myself maybe one hour of riding each day, then the rest with feet up on the dashboard of the support vehicle. Instead I managed the whole first day from Mansfield to Benalla, the whole next day Benalla to Shepparton, rested up the third day Shepparton to Bendigo with complaining soleas, Achilles and hamstrings, then rolled all the last day with fresh legs through the old gold mining country - Bendigo to Castlemaine.
http://www.facebook.com/group.php?gid=161822436056
Spring has sprung well and truly now - irises, tulips, ranunculus - and cartwheeling among them perhaps more than any other year for having lived through that fucker of a winter's saga: of which the next instalment is another neurologist appointment in a couple of weeks to discuss EEG and his inflammation theory.
I'd have loved to have an EEG or MRI done during my cello lesson last Saturday - feels like every little back room, nodule, lobe, crest, corner, saddle and peninsula of this recently violated scone glows and sings with long bowing of the C Major scale.
Found a fantastic teacher and loving it - I doubt there's any better way to encourage new brain connections/elasticity than wearing Learner plates with a fretless instrument.
Tuesday, September 15, 2009
Saltwater
Again back to that quote ...
the one about the cure for anything being tears, saltwater or sweat.
Well, took a few days out at Saltwater Creek with the lads ... magic.
Spoke to a neurologist last week ... he's got some ideas with impressive sounding Latin names about inflammation and how that can sometimes just happen all by itself.
Getting bored of neurology - getting excited by the spring and seashores.
Monday, August 17, 2009
'Stable'!!!
It's still there, somewhere deep right temporal lobe, above and behind right eyeball - and we still don't know what the fucker is ...
BUT - apparently it's not getting any bigger.
"Stable" they called me (or it).
I've been milking that for all it's worth: a renowned neurosurgeon's calls me 'stable'!
I see a diagnostic neurologist in a couple of weeks who is interested in the case and has been a part of the background panel of people involved - though I've never met him. He may have some other ideas to chase up in regards finding out what it actually is (or was).
BUT - so far as the surgeon is concerned, I'm now in the "let's see you in six months and keep up observations" bracket: it appears the body's own defence cells have surrounded it, contained it and appear to be making sure the fucker gets no bigger all by themselves without any chemical treatment. He's happy with that - and it meant a lot to see him relaxed and unconcerned. Four months of stress dissipated on seeing his relaxed smile.
I swam 1.25 kms in the pool the other night with Sean, I'm getting up on the ladder to finally clean my gutters, am about to purchase a road bicycle .
Neurosurgeon looked totally relaxed about all that - it's been four months now without passing out and he says the risk of it happening again decreases with time. BUT, I'm probably still a good six months off lobbying the state government to be allowed once again behind a wheel. That may still be a two year wait for a license.
AND I just bought two bee hives along with the nuclear reactor worker suit, smoker and all the other stuff, as did Jason. We introduce the queens and the swarms when spring warms up a little. My hives will sit at the foot of the magic manna gum pictured in the last posting, feeding off her nectar.
Red Hill Honey is born - though I have a world to learn (and hopefully now a bit of time to learn it!)
(The Photoshop enhancement to MRI pic is courtesy of Dave - who has made his own diagnosis of the situation: the gopher from Caddy Shack has taken up residence in there and grooving away quit contentedly, as it does in the cup of the 18th in the movie's final scene. The bee is one of my own shots from a ways back: we have much to learn from bees, like never ever ever giving up.)
Monday, August 3, 2009
of growth, quiet time and food ...
Another MRI tomorrow to see if this thing is getting bigger, smaller or staying content.
Starting to suspect some blood sugar issues - hitting the wall a lot lately: quiet time and food seems the only fix.
Quiet time is never a bad thing though ...
A better shot of my favourite Manna Gum (featured back in May) in some sort of elegant pose which those who know more more about dance could put a name to, and a fungi of some sort just starting life near the creek after much welcomed rain.
Mountain ducks are about lately: with a cunning system at feed-out time for the horses. Duck groom stands guard while duck bride raids what's left of old Troubadour's feed bucket.
Wednesday, July 22, 2009
Could be worse
Well, we sat with the man who knows all about beasties and ghoulies and fungi and yeasts and bacteria: he doesn't think it's any of those.
After two spinal taps (I learnt that they did a second while I was in surgery) he figures the spinal fluid would have given him some indication.
He was interested in the fact that the brain lining, the meninges, is inflamed.
That could lend itself to exploring the idea of cryptocuccus meningitis: a rare form of meningitis caused by a yeast found in Murray River Red Gum, ie/ firewood. It's a wee beastie that Melinda and Wayne had a long and difficult battle with a few years ago.
BUT: I'd have had crippling headaches, and it would have shown up in my spinal fluid - and would have been a lot more aggresive than what's apprently there.
More needles, more blood tests - but he doesn't think it's his department.
There's a few crew working on it he assured us - fascinated apparently.
I've decided I'm getting on with life: let them scratch their heads.
Dave, Bolivia in November is a distinct possibility for the World Rangers Conference with the Thin Green Line Foundation - and altiplano meandering time.
... and things could be worse anyways: here's a snapshot into Bennie P's backyard from his birthday gig - Once Was Home Brewer. Sad.
Tuesday, July 7, 2009
Fun in the frost
I've always found wonder in a frosty morning ... but this winter I seem to have the drive to get out of bed and really get amongst it.
Heard from my GP who has gone in and shaken the tree for me in regards getting lost in the public health system - apparently I'll hear very soon from the neurosurgery team with a referral to a specialist in brain hitch-hiking beasties 'exotic' and 'rare'.
In the meantime I'm back at work in full swing, loving that; and getting amongst the frost.
... and Emma, you're going to need a crowbar, solvent and a gang of bikies to get your D200 back.
Thursday, June 25, 2009
A focus - on what I CAN do
I've been told bike riding's completely out now by three medicos.
No wheels of any kind is frustrating as hell, and certainly impacts on lifestyle ... but I figure keeping focus on what I CAN do is important to get through these next few months.
Started back at much needed yoga this week with Karen, start cello lessons in a fortnight, will pick up the guitar again too with Tim.
... and I can take a slow walk by the dam with Emma's D200 and find magic in the duck feathers ...
Thursday, June 18, 2009
New fear flavour - born of 'negative'
Here's a correa in my front yard this afternoon, a delightful little local - one here long before we Anglos shipped in the cats, rabbits, foxes, pinus radiata and the daffodil bulbs (shooting to its left).
Being in its company under the canopy of my grand old friends the messmates and peppermint gums - there was a comfort of sorts (... things don't make as much sense to me in the garden as by the sea, but I know I'm torturing the ocean voyage metaphor. So now why not mix metaphors too, gardens and ice cream stores ...)
I'm starting to think fear has 32 flavours.
I've tasted possibly six these past weeks.
Yesterday afternoon a new, intriguing one. It's neither bitter nor sweet and, bizarre, born of the word "negative".
I wouldn't have thought at the start of all this that any negative result could be a scare.
... except that this one means they're clearly now out of ideas of what to test for.
So, I don't have Whipples disease according to Sydney's Westmead hospital. Sure, I'm happy about that - and still very happy about the negative result to tumours of any flavour.
BUT WHAT THE FUCK IS IT STOPPING ME FROM SWIMMING, DRIVING, GOING UP ON A FUCKING LADDER TO CLEAN MY FUCKING GUTTERS!?
They'll do another MRI in six weeks to see if it's grown, shrunk or stayed content.
And in the meantime, whatever colony of beasties it is still resides in my brain quite happily wrapped up a sleeping bag of my own foam cells, minus the 15 per cent gob extracted during surgery.
"So, the thing that made you drop, pass out completely and go blueish for four minutes, look stoned out of your mind and talk shit for another 10 minutes before ending up in the emergency unit ... ummmm, we don't know. And see you in six weeks. (And in the meantime sit on the couch - safely- because our lawyers advise us to advise you to do fuck all)."
Fear's something of what's going on (and that's been more Aperol and soda than straight Campari since we've been talking infection not tumour, more star-anise infused than fistful of fennel).
Not sure what flavour this fear is. Haven't worked it out. I think it's got a tang about it - an anger.
Correas in close to solstice afternoon light help.
Given that quite a few of these postings so far have been ventings/explorations of fear, this quote strikes a chord lately, and the correa sings it in chorus:
"It has been said that our anxiety does not empty tomorrow of its sorrow, but only empties today of its strength."
-- Charles Haddon Spurgeon
Being in its company under the canopy of my grand old friends the messmates and peppermint gums - there was a comfort of sorts (... things don't make as much sense to me in the garden as by the sea, but I know I'm torturing the ocean voyage metaphor. So now why not mix metaphors too, gardens and ice cream stores ...)
I'm starting to think fear has 32 flavours.
I've tasted possibly six these past weeks.
Yesterday afternoon a new, intriguing one. It's neither bitter nor sweet and, bizarre, born of the word "negative".
I wouldn't have thought at the start of all this that any negative result could be a scare.
... except that this one means they're clearly now out of ideas of what to test for.
So, I don't have Whipples disease according to Sydney's Westmead hospital. Sure, I'm happy about that - and still very happy about the negative result to tumours of any flavour.
BUT WHAT THE FUCK IS IT STOPPING ME FROM SWIMMING, DRIVING, GOING UP ON A FUCKING LADDER TO CLEAN MY FUCKING GUTTERS!?
They'll do another MRI in six weeks to see if it's grown, shrunk or stayed content.
And in the meantime, whatever colony of beasties it is still resides in my brain quite happily wrapped up a sleeping bag of my own foam cells, minus the 15 per cent gob extracted during surgery.
"So, the thing that made you drop, pass out completely and go blueish for four minutes, look stoned out of your mind and talk shit for another 10 minutes before ending up in the emergency unit ... ummmm, we don't know. And see you in six weeks. (And in the meantime sit on the couch - safely- because our lawyers advise us to advise you to do fuck all)."
Fear's something of what's going on (and that's been more Aperol and soda than straight Campari since we've been talking infection not tumour, more star-anise infused than fistful of fennel).
Not sure what flavour this fear is. Haven't worked it out. I think it's got a tang about it - an anger.
Correas in close to solstice afternoon light help.
Given that quite a few of these postings so far have been ventings/explorations of fear, this quote strikes a chord lately, and the correa sings it in chorus:
"It has been said that our anxiety does not empty tomorrow of its sorrow, but only empties today of its strength."
-- Charles Haddon Spurgeon
Thursday, June 11, 2009
winter wattle and a proverb
Wednesday, June 10, 2009
learnings
I think I remember from a cackle 10 years ago or more that my dear friend Luana's first words were "Hey Charger!" - that 1970s vehicular tribalism with the V for Victory sign out the window as two (no doubt purple or otherwise orange) V8 Chargers roared past each other at 30 miles over the speed limit, their moustachioed drivers lounging as movie stars.
Well, there's a very different club or tribe to which I seem to have gained membership this past few weeks: it's acknowledgment is there in an eye sparkle, a knowing ... and always a smile.
Its members have been there.
They know.
And they gleam for each day.
A friend and club member took me aside for a second just after dinner the other night and with a Spielberg spark in her eyes, index finger on my sternum - and beautiful smile - made me vow:
"never forget what you have learned"
Some of that learning is here in a slice of this morning's walk: we'd have had 15mm of rain last night, temp down to about zero, snow down to about 500m and we're at about 340 - real winter stuff.
And there is no grey about any of it ... much, much green.
Wednesday, June 3, 2009
'Rare' but no name
... nothing.
The trip to hospital was a complete waste of time. In an unfortunate communication stuff-up, nobody rang us to say the visit was unnecessary.
Spoke to a doctor I've never seen before, who was making it up as he went because the only information about me he had was what I could read from his screen: 'work in progress'.
I'm not a Category 1 patient anymore and the shift is quite obvious.
They're still testing in Sydney - something 'rare' (I liked 'exotic' better).
It was never going to be as easy as "you've got this, we're going to nuke it with this, bend over".
Possibly another two weeks.
They're building the suspense nicely. Fuck it.
The trip to hospital was a complete waste of time. In an unfortunate communication stuff-up, nobody rang us to say the visit was unnecessary.
Spoke to a doctor I've never seen before, who was making it up as he went because the only information about me he had was what I could read from his screen: 'work in progress'.
I'm not a Category 1 patient anymore and the shift is quite obvious.
They're still testing in Sydney - something 'rare' (I liked 'exotic' better).
It was never going to be as easy as "you've got this, we're going to nuke it with this, bend over".
Possibly another two weeks.
They're building the suspense nicely. Fuck it.
Tuesday, June 2, 2009
Direction finding duck ...
View D
Who farted?
This afternoon is the next instalment: pathology results from the range of 'exotics' they've been testing the blob for.
Scared shitless of course.
But I'm hoping that whatever they say it is - and how they're going to treat it - will at least give some sort of plan to how I'm going to live and work the next half of this year.
From what I gather treatment could range from a couple of pills, yet another needle in the arm, a program of radiology or a drenching gun up the arse (thanks to Gill for the Gippsland farm girl's solution).
There was a time - backpacking days - when moving in a very general direction was fine, somewhere within about 120 degrees of a sortakindamaybe destination, and if the next 'occurence' threw that course off 40 degrees, a laugh and a jar of the local brew would generally be enough to adjust the sails.
That was before self employment, or maybe I'm just no good at it now.
Doctor won't allow a jar of brew just now - and even under normal circumstances, it's 8.40am and it wouldn't be quite right - but a laugh does help ...
I came across another Op Shop gem that Emma scored on our hunt the other day: 'Bevknits' Pattern kit # 6002 for Men's Shirts, Sweaters and Cardigan. Gold!
Bevknit recommends reading their Space Age Sewing book (enquire at your nearest fabric store) and, for best results, remember to set your sewing machine to 'Supermatic stretch stitch'.
Emma truly has the eye when it comes to a 7 op shops/one morning adventure ... it's clear they really splashed out on modelling fees here, though the page designer probably didn't need to use the shot where the two golfing buddies were discussing who farted.
Scared shitless of course.
But I'm hoping that whatever they say it is - and how they're going to treat it - will at least give some sort of plan to how I'm going to live and work the next half of this year.
From what I gather treatment could range from a couple of pills, yet another needle in the arm, a program of radiology or a drenching gun up the arse (thanks to Gill for the Gippsland farm girl's solution).
There was a time - backpacking days - when moving in a very general direction was fine, somewhere within about 120 degrees of a sortakindamaybe destination, and if the next 'occurence' threw that course off 40 degrees, a laugh and a jar of the local brew would generally be enough to adjust the sails.
That was before self employment, or maybe I'm just no good at it now.
Doctor won't allow a jar of brew just now - and even under normal circumstances, it's 8.40am and it wouldn't be quite right - but a laugh does help ...
I came across another Op Shop gem that Emma scored on our hunt the other day: 'Bevknits' Pattern kit # 6002 for Men's Shirts, Sweaters and Cardigan. Gold!
Bevknit recommends reading their Space Age Sewing book (enquire at your nearest fabric store) and, for best results, remember to set your sewing machine to 'Supermatic stretch stitch'.
Emma truly has the eye when it comes to a 7 op shops/one morning adventure ... it's clear they really splashed out on modelling fees here, though the page designer probably didn't need to use the shot where the two golfing buddies were discussing who farted.
Thursday, May 28, 2009
to clarify ...
To clarify the notion of "someone on my shoulder" ...
That reference was about my old mate I lost mid last year - the one whose cardigan I was wearing on ANZAC Day, as I do most mornings with a cup of tea in the garden.
And it may well have been Leunig's direction finding duck right there on the shoulder with Pop too ...
Wednesday, May 27, 2009
un/lucky
There's been an essay growing on the notion of luck.
It's a colony first spawned in the culture dish of that collapse: unlucky to pass out for four minutes, rushed to hospital; so lucky to have fallen in a safe environment (well, save for a corner of Michael's desk) among good people who showed great care.
Someone was sitting on my shoulder throughout.
I hate to think about the places where and circumstances in which that event might otherwise have happened ... but it must be done.
Mountain biking flat out down the side of a gum-filled hillside?
Too soft - that's a self harm scenario only.
Let's get to the guts of it: I've driven my grandmother through crowded streets.
I've driven past schools just before the bell.
I've driven Nixie to school ...
... there it is.
A month or so thinking I had a brain tumour - potentially malignant ... that's an odd one.
I'm coming to think myself lucky for having experienced that - for reasons I need more low tide shuffling to articulate.
Someone has been sitting on my shoulder throughout.
Hopefully they're still there when we hear more news on Wednesday.
... in the meantime I'm going to do those low tide hours and try to call on some training to cull a few pages from the essay, then post a few better crafted pars that look like they will lean to the spiritual.
Suffice to say, through all this, I feel strangely lucky.
Perhaps it's not much different to my cringe in a pharmacy yesterday at the whine of a woman (who looked like she'd been chewed up and spat out by Iggy Pop) at the "shocking" weather - with her water supply at 26 per cent. While we in Red Hill - on tank water - rejoice after a night of rain on the roof.
But then I start to write about perspectives and it starts sounding trite again.
I'll give it more seaweed and abalone shell since, hopefully, there's not the need to rush.
Tuesday, May 26, 2009
Wednesday adventures
Went for blood tests, arrived wrong time ('predose' is another word in the medical lexicon I now know - it's a steep learning curve).
Well overdue for a chuckle.
Went Op Shopping with Emma ...
Rosebud Vinnie's came up with these at $4 for the pair with winter just around the corner.
Kim's not chuckling so there's a chance they'll end up on Bennie's feet in his shed while he thrashes out Hendrix on his Fender ... though I might pierce the lefty first.
Well overdue for a chuckle.
Went Op Shopping with Emma ...
Rosebud Vinnie's came up with these at $4 for the pair with winter just around the corner.
Kim's not chuckling so there's a chance they'll end up on Bennie's feet in his shed while he thrashes out Hendrix on his Fender ... though I might pierce the lefty first.
Tuesday whimsy
If fear had a Beaufort scale ... Force 12 might have abated to a Force 9.
... and feeling stronger for having felt the Force 12 ... perhaps even for the very fact of the embarkation a month ago.
"Under the best of conditions, a voyage is one of the severest tests to try a man"
- Ralph Waldo Emerson
... that combined with something about 'anyone can stand by the helm in calm' ... can't remember who wrote it.
Sunday, May 24, 2009
Smokebush BOG ... GOB being tested
Smokebush Grace (Cotinus coggygria 'Grace') leaves get Best on Ground today - the heavy saturation crimson leaves backlit over the past few months give an almost Andy Warhol effect, here in their last days before winter they adopt reptilian markings (but of course, lose a bit squished in the scannner)
Seven sleeps to winter, eight sleeps until we hear what this hitch-hiker in my head is.
More interesting still will be the treatment - whether we use a spray of Baygon in right ear, open lid and lob in a mini Molotov cocktail or shove a needle up my nose and into its arse. Being Australians, we'd have to find some strain of bio control we can employ (which would then set about destroying more than little Pol ever could or would) - microscopic cane toads?
Apparently there are many tests being done by many people on the gob extracted, Wednesday week we find out what new twist to the tale they come up with.
... It's nice to know what it isn't.
At three quarter time, an open letter of thanks
Dear Mr Danks and team,
It’s a simple A Minor chord ...
If this note of thanks had a backing track, it’d start with an A Minor strum.
Though all’s not entirely over or indeed known yet on this bizarre journey of the past month, I wanted to give you my very sincerest thanks at what I hope is at least something of a three quarter time break, and this left hand formation perhaps best represents a soup of emotion post operation on my right temporal lobe.
With random scribblings of fears pre-op filling two and a half A3 pages, this three finger formation made by me soon after coming out of theatre is a picture of a joy indescribable, which I hope none of you ever have to know. It followed soon after I made my wiggle of toes and a four year-old’s whine about how the catheter felt like it might have a fish hook or burning ember at its end (to my embarrassment in hindsight!)
Those fears included coming out of surgery as a hybrid of three or more chapters from The Man Who Mistook His Wife for a Hat – perhaps preposterous to you who understand the brain much better than I, but real fears to me nonetheless.
Then there were the visions of a life after stroke . . . and worse.
After this simple right brain to left hand communication, I then formed G, C an D chords in my still groggy haze, then went through the 3X table – and a good many of those fears vanished, knowing things had to be working reasonably well up there.
From my very first meeting with Mr Danks, myself and family felt great comfort that I was clearly in the right hands – an important factor when resigned to the fact that the man in front of me was soon to go deep inside my brain with stainless steel (not to put too fine a point on it – excuse the pun).
I had prepared for a minimum four weeks, possibly eight, on my back and not much able to string more than a few words together: I feel that my recovery is remarkable and a testament to your excellence as a surgeon.
Perhaps equally important though is the obvious sincerity, empathy, compassion and clear articulation in layman’s terms of a complex and very frightening matter to myself and family at all times by yourself and your team.
You have shown real interest, real care.
It has been much appreciated at a very tricky time.
Again, thank-you all.
Sincerely,
James Clark-Kennedy 25.05.09
It’s a simple A Minor chord ...
If this note of thanks had a backing track, it’d start with an A Minor strum.
Though all’s not entirely over or indeed known yet on this bizarre journey of the past month, I wanted to give you my very sincerest thanks at what I hope is at least something of a three quarter time break, and this left hand formation perhaps best represents a soup of emotion post operation on my right temporal lobe.
With random scribblings of fears pre-op filling two and a half A3 pages, this three finger formation made by me soon after coming out of theatre is a picture of a joy indescribable, which I hope none of you ever have to know. It followed soon after I made my wiggle of toes and a four year-old’s whine about how the catheter felt like it might have a fish hook or burning ember at its end (to my embarrassment in hindsight!)
Those fears included coming out of surgery as a hybrid of three or more chapters from The Man Who Mistook His Wife for a Hat – perhaps preposterous to you who understand the brain much better than I, but real fears to me nonetheless.
Then there were the visions of a life after stroke . . . and worse.
After this simple right brain to left hand communication, I then formed G, C an D chords in my still groggy haze, then went through the 3X table – and a good many of those fears vanished, knowing things had to be working reasonably well up there.
From my very first meeting with Mr Danks, myself and family felt great comfort that I was clearly in the right hands – an important factor when resigned to the fact that the man in front of me was soon to go deep inside my brain with stainless steel (not to put too fine a point on it – excuse the pun).
I had prepared for a minimum four weeks, possibly eight, on my back and not much able to string more than a few words together: I feel that my recovery is remarkable and a testament to your excellence as a surgeon.
Perhaps equally important though is the obvious sincerity, empathy, compassion and clear articulation in layman’s terms of a complex and very frightening matter to myself and family at all times by yourself and your team.
You have shown real interest, real care.
It has been much appreciated at a very tricky time.
Again, thank-you all.
Sincerely,
James Clark-Kennedy 25.05.09
Saturday, May 23, 2009
Peter, Russ, or Pol?
I think I remember, from way back in my days as a Crisis Line counsellor, something about externalisation being a helpful coping mechanism for many a drama . . .
Going with Amanda's suggestion, this beastie or tribe of beasties in my brain needs a name.
Once it has a name of its own, an externalisation, we give shape, form and persona to wage war upon.
Gus and Jodes figure it's a Russ.
I picture a hybrid octopus/dugong character with a Peter Costello smarmy smile and eyes of steely intent.
Given its likely SE Asian origin, I think 'Pol' fits well as a name: I can picture it hands on hips like the 1975 Cambodian dictator we all despise, intent on mass execution of one third of the grey matter around it.
Any other suggestions ?
(illo borrowed from matthewyglesias.theatlantic.com)
Wednesday, May 20, 2009
Brain or balls?
On my wanderings this afternoon, this unsympathetic colt and I had a natter, which ended in him snorting: "So what . . . I've heard on the wind that I'm losing my knackers soonish - where would you rather the knife really, brain or balls?"
The Mexican sage is a near-winter stunner: a favourite of the bees right now, and a pair of Rufus honeyeaters.
'Exotic', 'fluffy' twist . . . I get to grow old
In true B Grade drama style, an 'exotic', 'fluffy' twist which would make me turn the channel because the plot is now so preposterous . . . we heard last night neither benign, nor malignant.
We had thought the best case scenario was the word 'benign' , and I had readied myself for the rough road of chemo and all that other ugly stuff . . . with a broad grin neurosurgeon Mr Danks announced (and I will try my best to use direct quotes): "I have good news - the pathology results tell us it's not a tumour, well, let's qualify that with 95 per cent sure it's not a tumour".
(... though I do hate that 95 per cent stuff after being in the 5 per cent category for CSF leakage post lumbar puncture)
In fact, many of the cells in the mass that Mr Danks and his team went in and excavated last Thursday are 'foamy' or macrophage cells - the body's own little security guards that go in and tackle invaders. Their presence means a whole new ballgame.
According to Ross and Wilson's Anatomy and Physiology, these cells will "bind, engulf and digest foreign cells or particles".
What they're attacking, we don't know yet, and this is where it gets intriguing: the pathology people are testing over the next two weeks for a range of 'exotics'.
Apparently there's a good chance I've been carrying around some brain infection since my first travels in Asia - back in 91. It could also be that I've carried around some hitchhiker parasite deep in there behind my right eye for 18 years too.
All of it makes more interesting the fact that I had a fever for a week before that first epileptic episode in Hong Kong ... and was it really dysentary in Calcutta?
Me, shellshocked, asked how this 'exotic' infection theory is better news than a tumour.
His words, to the best of my recollection: "because tumours kill people, infections in the modern day do not".
Once they define what this lodger is, it gets an eviction notice and a dose of something and it's gone.
... and I get to grow old.
My mother, perhaps for that moment forgetting that I was just six days out of surgery, gave an embrace to test thoracics were still sturdy and showed her best restraint in not leaping across the room to hug the surgeon.
I see him again in two weeks - by which time hopefully they have a name for the infection/parasite, and a good dose of Roundup for this weed.
A nurse then removed my staples - with me looking like some marsupial on the Hume caught in Roadtrain headlights.
Emma's still pretty sure that I was abducted by aliens who inserted a foetus by anal probe and the planet's colonisation by neon glowing walruses is about to begin when this thing wakes up and crawls out my eye socket . . . and she knows it only hurts when I laugh.
Later this week there'll be a three-storey bonfire in Red Hill to celebrate beneath the stars - and while I'm not yet able to do cartwheels, I'll be stomping my very best 'Where The Wild Things Are' dance around it.
... and I heard somewhere, from some 1970s road movie perhaps, that 'chicks dig scars', right?
We had thought the best case scenario was the word 'benign' , and I had readied myself for the rough road of chemo and all that other ugly stuff . . . with a broad grin neurosurgeon Mr Danks announced (and I will try my best to use direct quotes): "I have good news - the pathology results tell us it's not a tumour, well, let's qualify that with 95 per cent sure it's not a tumour".
(... though I do hate that 95 per cent stuff after being in the 5 per cent category for CSF leakage post lumbar puncture)
In fact, many of the cells in the mass that Mr Danks and his team went in and excavated last Thursday are 'foamy' or macrophage cells - the body's own little security guards that go in and tackle invaders. Their presence means a whole new ballgame.
According to Ross and Wilson's Anatomy and Physiology, these cells will "bind, engulf and digest foreign cells or particles".
What they're attacking, we don't know yet, and this is where it gets intriguing: the pathology people are testing over the next two weeks for a range of 'exotics'.
Apparently there's a good chance I've been carrying around some brain infection since my first travels in Asia - back in 91. It could also be that I've carried around some hitchhiker parasite deep in there behind my right eye for 18 years too.
All of it makes more interesting the fact that I had a fever for a week before that first epileptic episode in Hong Kong ... and was it really dysentary in Calcutta?
Me, shellshocked, asked how this 'exotic' infection theory is better news than a tumour.
His words, to the best of my recollection: "because tumours kill people, infections in the modern day do not".
Once they define what this lodger is, it gets an eviction notice and a dose of something and it's gone.
... and I get to grow old.
My mother, perhaps for that moment forgetting that I was just six days out of surgery, gave an embrace to test thoracics were still sturdy and showed her best restraint in not leaping across the room to hug the surgeon.
I see him again in two weeks - by which time hopefully they have a name for the infection/parasite, and a good dose of Roundup for this weed.
A nurse then removed my staples - with me looking like some marsupial on the Hume caught in Roadtrain headlights.
Emma's still pretty sure that I was abducted by aliens who inserted a foetus by anal probe and the planet's colonisation by neon glowing walruses is about to begin when this thing wakes up and crawls out my eye socket . . . and she knows it only hurts when I laugh.
Later this week there'll be a three-storey bonfire in Red Hill to celebrate beneath the stars - and while I'm not yet able to do cartwheels, I'll be stomping my very best 'Where The Wild Things Are' dance around it.
... and I heard somewhere, from some 1970s road movie perhaps, that 'chicks dig scars', right?
Tuesday, May 19, 2009
To the guts of the (brain) matter ...
This morning has been a slow moving wander - punctuated with a Rose-like nap in full sun on the deck - compiling a list of questions for this afternoon's meeting with the doctors.
Among them:
'When can I swim again? I must swim.'
A silly fear perhaps in medical terms, but one that makes sense to gardeners: 'doesn't pruning encourage growth?'
The list gets less silly: Benign or malignant ... either way that opens the door to the next question, the real matter, 'let's talk life span'. That's one I know they're going to have standard responses for, like 'it depends on many variables' and other such non-committal, well rehearsed language. But really, they got 15 per cent out, there's still 85 per cent in - and wrapped around blood vessels and other 'important structures'. Well, how fast is it growing? How long until it starts really messing with me? How long have I got? I guess at 38 and all going well I'd given myself another 45 years on this earth - what now, 5? 10? 25? 35?
It's a discussion no-one wants to have, well meaning friends and family whose role it is to help you keep your chin up especially. But really, it's fundamental to all of this: 'benign or malignant' is only half the question, 'how long' is the guts of the story.
I mean, being concerned that your superannuation is in three different funds and budgeting for eating out just twice a week looks pretty stupid if you've got 15 years right?
Putting that walk in Argentina off any longer than it takes to recover from this shit starts to look really dumb too.
70% cacao dark chocolate together with fresh mandarin segments for a late morning snack help all this a little, so too some consultation with a few locals . . .
The wattle birds were too busy but the family of magpies down the driveway, chortling like Swedish backpackers, didn't seem to think there was much to be concerned about. The cormorants, moor hens, the mountain ducks - all seemed to say benign and went back to the rich happenings in, on, under and around the dam.
The swamp harrier, seemingly at play giving the crimson rosellas and the sulphur crested cockatoos a scare with dazzling aerobatics ... I'm sure I saw him wink.
I only speak a smattering of eastern rosella: but I didn't pick up 'malignant' in anything they had to whistle and glark to me. I don't think it's even in their language.
My favourite manna gum, in an elegant forward lean, as if having come out of a glissade down the hillside decades ago and frozen there: seemed to suggest there were broader, wider concerns, possibly related to how many rings you had to count.
Grevillea didn't say much - just burst out a smile that'd light any room.
I didn't think the seriously confused bearded iris - not sure even which hemisphere it is in - was of fit mind to consult, but it's here because it looks beautiful anyway.
Such thoughts are probably best tackled in short bursts.
Celebrating the pumpkin harvest and compiling a list of recipes to use them up is possibly healthier this next hour or two: an Asian styled pumpkin soup with ginger and coriander kiss I am particularly looking forward to this week - benign or malignant.
And another fundamental one for the doctors:
"What if the Hokey Pokey really is what it's all about?"
Nurse Rose
Nurse Rose has been making sure I'm ok, and likes to play wheat bag on me while on the couch in front of the fire. I'm not a cat person - they eat birds and I'm a bird person - but this one is very hard to dislike. I've tried.
I'm learning valuable lessons from Nixie's cat - with the feline apparently needing to sleep about 16 hours a day, they're good ones to watch when you're not up to normal speed. In this time of convalescence, Rose was good enough to show me - and share with me - her best spots to curl up in as the sun moved through the morning.
As a nurse, well, Rose is not too quick with a glass of water or pain killers, but then she doesn't want to take my blood pressure every half hour either, nor is she injecting anticoagulants into my stomach, making a pin cushion out of forearms and backs of hands - and isn't asking me at 3am in a near northern neighbour accent "Ha yoo ohpun yo bow toodee?".
Trite to embrace?
Random glimpses into a perfect autumn day - out of hospital and in the sunshine . . .
Tomorrow at 4.15pm we talk to the hospital team:
25 staples removed ... and biopsy result discussed.
Snowgum in flower.
The morning dew.
Eucalytpus caesia - the juvenile with its big broad leaf, longer narrow ones form
on the mature plant.
... biopsy result.
A day to embrace all: everyone and everything around.
I want to say something like 'makes you wonder: what if we lived every day like it was the day before receiving biopsy results?' but it sounds too trite, even as bad as some sort of US corporate sales coaching program bullshit. Anyway, there, I said it . . . in among being very aware and appreciative of beautiful stuff all around on a blissful autumn day.
Tomorrow at 4.15pm we talk to the hospital team:
25 staples removed ... and biopsy result discussed.
Snowgum in flower.
The morning dew.
Eucalytpus caesia - the juvenile with its big broad leaf, longer narrow ones form
on the mature plant.
... biopsy result.
A day to embrace all: everyone and everything around.
I want to say something like 'makes you wonder: what if we lived every day like it was the day before receiving biopsy results?' but it sounds too trite, even as bad as some sort of US corporate sales coaching program bullshit. Anyway, there, I said it . . . in among being very aware and appreciative of beautiful stuff all around on a blissful autumn day.
Monday, May 18, 2009
Don't fuck with me . . .
On the Tyson thing: I've been in Red Hill today - to the post office, bakery, general store - scaring young and old with the remodelled face.
I'm going to get a T-shirt made: 'You should see the other bloke . . . don't fuck with me'
(Posting this pic because it's more impressive with the bigger bandage)
'Nothing a year in the tropics wouldn't fix'
Therapy tubing
Friday, May 15, 2009
Jim's Dad here again. Jim escaped from the High Dependency Unit 24 hours earlier than expected, and is in a normal ward. He now has a developing shiner as the bruises from surgery come out, and he is sleeping most of the time, which is normal after surgery. Jim is expected to be discharged on Monday. We expect there will be a meeting on Wednesday to discuss the results of the biopsy and the next steps. Jim is on his feet for brief excursions down the corridor, but this leaves him pretty tired at the moment.
Thursday, May 14, 2009
Hello everybody, Jim's Dad here. Jim is out of surgery and is recovering quickly after a 3 1/2 hour operation. He has traded his multiple Doctor Who type headplugs for a new punk look with partially shaved head and interesting scar. Luckily, Jim hasn't had any of the possible side effects such as stroke or temporary double vision. After running some quick internal checks, Jim has declared that he is still Jim, which we are happy about. Late-ish last night he was preparing for some proper sleep. Today we expect him to be preparing to be bored with hospital. The surgery removed about 15% of the growth and the biopsy results could be as late as Tuesday, which is when we will hopefully know what the appropriate treatment approach will be. If there is any more news in the meantime I will post it here. Cheers.
Wednesday, May 13, 2009
Personal E-tag trial ... cheers all
The neurosurgeon's assistant and the radiologist seem to have rigged me up as a guinea pig for a trial of personal E-tags: coming home this arvo they beeped under each of the Eastlink toll sensors probably racking up $1.16 a piece.
Apparently they're actually little channel markers to help the surgeon find his way around in there tomorrow.
Anyway - they promise me a haircut to rival Sid Vicious and the self-portraits are apparently going to get a bit like those warnings on cigarette packets for a couple of weeks ...
So here's a filed Bay of Many Coves one from an NZ escape (healthier days):
with a cheers to all for your incredible support over this month.
(and Dad will be posting a post operation update/biopsy result in coming days)
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